We need your help. Please copy and past this link into your browser’s address field to participate in a survey on end of life issues in relation to multiple sclerosis:
https://www.surveymonkey.com/s/end-of-life-ms-survey
Please send this link to as many people with multiple sclerosis that you know.
Thank you
Perhaps if the people paid to research this disease could come up with treatments that stopped this disease in its tracks, then we wouldn't have people with MS reaching a point where they had to face such issues (or rather they would face them when they get to c.80 years old like normal people). What will be the outcome of the results of this survey? I'll be on a plane to Switzerland before I have to get too worried about late stage MS.
I couldn't agree more. However this doesn't mean we should ignore the needs of people who have reached a point when these issues have become a reality (please see details of the Purdy case in the UK). At Barts and The London we are simply trying to take a holistic approach to the disease and need the information from the survey to help is plan and develop our clinical services.
Fair point – I don't doubt that you and your team are working hard to find some better treatments. But this sort of survey is a bit of a wake up call to those with the disease that it's a bit more than pins and needles / mild inconvenience. I couldn't attend the research day so don't know what treatments are in the pipeline for progressive MS.
We will let you know when recordings of the talks are posted on the web.Prof G